Doctor Advice?

[mkoven]

With all my weird stuff of late, I"m having difficulty getting the right doctors focused on difficulties. So many scary symptoms unexplained.

In particular, I had an unpleasant experience yesterday. I'll be vague about doctors' identities. I just went to see an autonomic specialist at a big place--whom I'll call faraway doc. Prior to this I was seeing someone for ans difficulties who knows this specialist. This person (nearby doc) sent an email to faraway doc, reviewing my case. I knew she had sent an email, because she told me so.

However, I just received in the mail the first part of the full report from faraway doc. Enclosed was a copy of the email from nearby doc. I'm sure nearby doc did not want me to see this. It certaily wasn't written for my eyes. Yes, it reviews my case, but is also describes me as excessively "panicking" about chest pain episodes, and comments in a ratehr uncharitable way that I've called and emailed "multiple times" during these episodes. Nearby doc seems to think that my concern about chest pain is excessive and conveyed this to faraway.

Nearby doc has been my ans doc. I don't know what to do. I really don't like how I was presented in this email. And I can't say anything about it, as it wasn't written for/to me. But it makes me feel that I"m not being taken seriously. What would you do if you felt like, somewhat behind your back, a doc wasn't taking your concerns seriously? As you all know docs with ans expertise are rare... I do think that in general if one has a doc one doesn't connect with, it's time to move on, but there are only so many options in the ans world.

[pat57]

chest pains are scary and your Dr. can't tell you to ignore them, because too many people die that way!

SOOO I think he is in a dilemma himself.

[hollie]

If this was me... I would be SO "P"ed off! First, I would drop that doc like a bad habit! If they're not taking you seriously, they cannot help you. Second, go find someone that will pay attention. Yes, it may take time, but chest pain is no fun and it's not to be taken lightly! Third, I would let nearby doc know why you've given them the cold shoulder. I don't know if I would have the guts to talk to them face to face, or even on the phone. However, I would write a letter to them. Even though that email was not ment for your eyes, you still received it and read it. I can't help but think that maybe far away doc sent you that letter so you would know what nearby doc really thought of you. I think he was looking out for your best interest, which is more than you can say for nearby doc!

Another thing that I've done in situations like this (not doc related - friends, family, co-workers) write a letter that you would send to nearby doc. Put everything in it you have wanted to say to them for years (good and bad). Once you get done, then decide if you really want to mail it. If you don't mail it - burn it. Just getting it on paper & out of your system will help you more than you know!

I hope things get better!

Hollie

[firewatcher]

Having just been through this myself, I say look for a new doc. Ask a doc that you like and have already (mine was my OB/GYN) for a list of docs that they like and trust, or who they would see if they were in the same situation. Get all your stuff together and start "interviewing" doctors. Tell them up front that you were unhappy with your old doc and looking for a new one AND that this is merely an interview to see if they can work WITH you. I found a wonderful doctor this way!

Then, write that letter. Wait a week and reread it and edit it. Do this until you can distill it down to just the facts about how you feel and not be accusatory or deliberately offensive. It took me six months to do this. I had been referred by doc #1 to a psychiatrist who actually did not think that this was "all in my head" like doc #1 did. I let him proof the letter before I sent it to doc #1.

Your first doctor needs to know why you left their practice and that what they say will get back to the patient. If this doctor could not be open and honest with you, then they have no business being your doctor. A doctor/patient relationship is very much like a marriage or priest/flock relationship, there has to be absolute trust: they are responsible for you health and possibly your life. If doc #1 thought you had anxiety issues with your chest pains, then they should have addressed that as well!

Good luck! I managed to find three really good docs and an excellent psychiatrist (who cut me loose saying how impressed he was by the way I was handling all the uncertainty and obviously physical issues.) There are excellent docs out there (they are just people like us,) we just have to find them.

[Csmith3]

Yes, I would be very annoyed about being described in that way - it is very unprofessional, unnecessary and hurtful. These sorts of incidents seem to arise quite often, so don't take it too personally. And didn't your local cardiologist tell you to keep presenting at the ER at each episode of chest pains?

However, I'm not sure I would move doctors right now. That would depend on what I thought of local doctor before this incident. You seem to be in the middle of a big case review and I think I would have some consistency at this point. Depending on how well you got on with this person (before the recent email!) I might take the email along next time you saw them and embarrass them in a joking way and assess their reaction. I would then make my decision on whether to look for someone else.

Is there another doctor (PCP?) who you could mention this to. They may be able to recommend an alternative or be in a position to assess whether it's worth forgetting about this incident for the sake of your long term care.

I suppose another option is to use faraway doctor on a longer term basis once things have settled and you don't need to consult very often.

This is not what you need right now!

[Maxine]

I would PRINT that e-mail, just in case.........hmmmmmmmm

The local doc is out of line, and you need to have this on hand should something happen, and your line of health care is possibly affected because of this e-mail---------or this doc not taking your health concerns/chest pain seriously.

I'm so sick of these condescending docs--- When are they going to "get it". I'm not talking about getting to know about POTS---------but realizing they can't keep treating patients like this. How do they get away with it?

They sent this e-mail to you in error-----------it's not your fault. You can approach him/her about it if you want.

Maxine :0)

[MightyMouse]

Just my personal opinion-- but I wouldn't spend a minute going to see a doctor who thinks so "highly" of me.

Nina

[lorrie]

You stated that you couldn't say anything because the email wasn't written to you, but I disagree. It was written ABOUT you and it was sent to you. You could not help that the other doctor sent it to you in the mix with the other documents. I would say something and see what the reaction is. Possibly they can offer an explanation that will make you feel better. If not, and you still feel like they are being judgmental, you can always find another doctor.

My point is that you should let the doctor know how you feel and give her the chance to explain. Hope you feel better soon. I know this is frustrating and you don't need that now.

[MightyMouse]

I disagree with lolo on this one-- your doctor has already made up his/her mind about you with regard to an emotional component of your health. Confronting the doctor *could* go well, but it could also blow up in your face. If you still need cooperation of this doctor to access to a new potential doctor, and/or avoide possibly tainting the opinions of others you may choose to use for your care as not only being panicky but also confrontational, then you may want to just find your way to another provider.

Just my 2 bucks worth (I said too much to fit the two cents quote).

Nina

[MightyMouse]

Okay, I realize upon reading what I've written that I sound like a cranky old lady. Sorry about that. Nina

[mkoven]

thanks, you guys. I'm still thinking about what to do. I'm so frustrated and disappointed by my recent spate of doctorly interactions. and yet I'm still so dependent, with all my wacko symptoms. I wish I could go back to my 20s when I never got sick.

I guess the good news is I'm about to leave town on sabbatical till next summer and will be in a different big city (Washington, D.C.), and will have to have new doctors. Maybe things will go more smoothly there? but then we'll come back and I'll have the same options.

[yogini]

I've had lousy ANS drs for different reasons. I wouldn't break off the relationship or send a letter just yet, but be on the lookout for someone else and maybe only use her in case of emergencies if you haven't found anyone else. At your next appointment, you could ask her whether she thinks your chest pains are something you shouldn't be worried about or have investigated. I doubt she would say yes - if nothing else for liability reasons!

[mkoven]

I'm not really the confrontational sort, so I can't see myself directly bringing up her email. Hmmm...

[iheartcats]

I'm not really the confrontational sort, so I can't see myself directly bringing up her email. Hmmm...

I tried to PM you but your box was full - popular!

I've had to cut ties with a doctor because when my appointment came close, I became panicky. Seeing a physician shouldn't increase anxiety - and I was just getting a vibe that the doctor wasn't 'that' concerned...test after test, yes, but then what? Not getting back to a patient during a very bad flare-up is never good practice.

Hope you find some helpful docs in DC. I would think they'd have some great physicians in that area.

[mkoven]

Hi Catlady,

Just emptied my box!

[flop]

oh - an interesting discussion with lots of different opinions. I don't think that there is a "right way" to deal with this issue. Some people would want to let nearby dr know that you have seen the e-mail (not necessarily confront them). Some would want to openly ask why the dr thought they were panicky and what reaction nearby dr would consider normal when experiencing chest pain. Some would want to change dr without saying why. Some would want to change dr and let nearby dr know that the e-mail was a problem. Some would want to not mention the e-mail and keep seeing nearby dr. I'm sure that there are other options too.

One thing that I would bear in mind is that we hardly ever get to know exactly what our doctors think of us. Even the most "caring" doctors probably think some negative things about us as patients that we wouldn't usually get to hear about. If nearby dr had said something really outragious and it was evident that they didn't believe anything that you had ever said to them, then it would be a different situation than if they had moaned about a concerned patient who phoned up a lot.

No-one can make the call for you but some things to consider may include:

- can you still talk to / work with this dr?

- are there other ANS doctors locally that you could see?

- do you have other drs (eg PCP or cardiologist) that you could contact first about some health problems (only see nearby

doc for ANS issues)?

- can you wait until after your sabbatical when your situation may be different?

lots to consider!

Flop

(Overhere in the UK it is rather different as we can't choose our specialists - your GP refers you to the nearest hospital and you see whichever dr has the shortest waiting list and essentially you are then stuck with that specialist unless they refer you to someone else).

[lorrie]

Nina...you didn't sound cranky...lol

I didn't mean you should go in having a fit and being confrontational. I just think you should allow them the chance to explain. You could have been taking the email the wrong way. I reread my post and I thought it came across the way I meant it.

At any rate, I hope you get all this worked out.

[MightyMouse]

Hi Lolo, I should explain myself with regard to saying that the situation could "blow up"--

Doctors are humans, and as such, not all may handle being caught having said something so unflattering about a patient the same way, even if asked about it in the most non-confrontational way. We had a few members over the years who've had trouble finding a different doctor b/c their former doc had labeled the patient as a troublemaker. We would like to believe that in the US, the communities of medical professionals hold to the absolute sanctity of privacy in care, but the reality is somewhat less than that, and I say that based on experiences not just reported here on the forum, but what I've experienced myself. My biggest concern for Michele, in this instance, is that she gets the care she needs and also has access to her records without having to worry that any disparaging commentary added.

[Tessa]

Hi

I have been reading your post several times and have decided to answer. Of course, I am not a doctor and I cannot give you any advice as a doctor. I can only speak from my own experience, from what I?ve learned by myself and thanks to others? But it may help you to rule out things. What else can you do if doctors do not seem to help? I had to learn things too and get to the base of it without the help of a specialist first and then, showing them what I found, together with the doctor? But, that?s a long story? Sorry for the long post, though it might be useful.

I have been suffering from chest pain too, as well as from shortness of breath. Sometimes the pain went up to my left shoulder and left arm, as well as to the back? Further to having my heart racing from lying to standing, standing and sometimes, even while sitting. Other symptoms I had were dizziness, nausea, etc.

When my dx was POTS I thought that I had finally arrived to the end of an ongoing journey from one specialist to another and that I would have the right treatment for all my health issues (the chest pain and discomfort included). But it was not.

Furthermore, I nearly died after getting sublingual nitroglycerin (so it worse with nitroglycerin for me too).

Then one day, reading Dinet once more, I found information stating that POTS can be caused by adrenal issues? I read about adrenals and many symptoms matched with mines?

It?s a long story, but I am not going to tell you everything (this would be a never ending post)?

The thing is that once I?ve started the treatment for my adrenal insufficiency, the chest pain went away!

What I am trying to tell you is that chest pain can be triggered by a wide range of causes. Some can be serious, others not. Getting to the reason of having chest pain is not easy but if your doctors do not have any idea, maybe it is time to check yourself and give them a light.

If your adrenals are not working properly, you very likely will have POTS, as well as chest pain, and many other health issues? Your electrolytes will not be properly balanced and this can also cause chest pain? Potassium or sodium could be above or below normal levels or not within the most appropriated levels and cause chest pain, as well.

Adrenal issues are more common than you might think and it is not easy to get a dx. It is a rare disorder and it is not easy to find a doctor who knows about it.

Your health problem can be or cannot be related to what I mention. I do not know, but there is a chance.

Have you ever undergone a right blood test for adrenal issues?

By the way, do you have a low blood pressure?

Nitroglycerin is a vasodilator and has been associated with acute episodes of angina pectoris, myocardial infraction and sudden death. Other signs and symptoms associated with it include dizziness, nausea, palpitations, and decreases in systolic, diastolic, and pulse pressures. These initial signs and symptoms, including headache, are indicative of a shift in blood volume form the central to the peripheral circulatory system, initiated by dilation of the blood vessels.

If the reason of your chest pain is related with your adrenals or electrolytes and your problem is vasodilation, then nitroglycerin can worsen your health.

Nitroglycerin can cause sudden severe hypotension. Patients with normal or low pulmonary capillary wedge pressure are especially sensitive to the hypotensive effects of nitroglycerin.

I hope to have been of any help. It is difficult to explain things trying to summarize.

Take care,

Love,

Tessa

P.S.: By the way, I agree with Nina. You have to find a doctor who believes in you, who really cares and who has the knowledge. I know: a difficult task. But you will find someone. I am sure.

Get all the knowledge you can and look for a good one...

[sheba]

So if Im not getting enough sodium i will have ches t pain? I am really upset right now because I urinate alot because and they come then they go.